Living with Eosinophilic pustular folliculitis
A skin condition with recurring itchy bumps and pimples, mostly on the face, scalp, neck, and trunk.
Understanding Eosinophilic pustular folliculitis
The pustules mostly appear on the face, scalp, neck, and trunk and may last weeks or months. It affects males more than females. There are several types, including a classic form seen mostly in adults in Japan, one linked to HIV or a weakened immune system, and an infant form.
Signs & symptoms
GARD describes these features in its summary:
- Itchy red or skin-colored bumps
- Pustules (bumps containing pus)
- Bumps that return again and again
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with rare disease patient organizations for support
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet. Skin biopsies find eosinophils (a type of immune cell) around hair follicles.
Also known as: classic epf (eosinophilic pustular folliculitis); eosinophilic folliculitis; ofuji disease; ofuji's disease
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Eosinophilic pustular folliculitis.
Explore research for Eosinophilic pustular folliculitis
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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